I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Pulmonary hypertension patient, Kalena Sawyer is always
spreading the word about her rare, life-threatening illness.
Because PH is an invisible disease, Kalena wants people everywhere
– especially medical professionals to become #phaware.

My name is Kalena Sawyer and I'm from Okemos, Michigan.

It was May of 2013 and I could not breathe. I thought I had
asthma and went to the hospital. Did an EKG. I was admitted to the
hospital and they took some x-rays. They gave me Lasix. We went at
3:00 in the afternoon. By midnight in my hospital room, I had
cardiac arrest and died. They broke a rib getting me alive or
getting me back to the world. I was in ICU and they diagnosed me
with this disease. I have a lung full of fluid. I had pneumonia. I
had sinus infection and I had to be on a CPAP machine and that's
how I was diagnosed.

I've never felt better. I lost 165 pounds. I had a hip
replacement last June and the doctor said I had to lose 100 pounds
so I did that. I had 50% chance to live through it and I said,
"Yes, I'm going to get it because I didn't want to be in pain."
Plus, I was on oxygen for two years. My life is completely changed.
They took me off oxygen six days after the hip surgery. A week and
a half later, I was off painkillers and no oxygen and I just
couldn't believe it.

I can walk, I can do yoga and I've never felt better. The years
before, I was always out of breath. I was diagnosed with high blood
pressure and my doctor thought I probably had the disease a year
before I was diagnosed. I have my good days and bad. I push it
sometimes and then I'm wiped out the next day. I have to remind
myself that I'm sick because I feel so good. The longer that I'm on
this medicine, the better I feel.

Spreading the word, it's such a weird disease. Especially in the
hospitals in the area that I live in, they do not know this
disease. I'm always spreading the word. I'm always showing my ...
I'm not shy. I keep my pump in my bra to be blunt and I have my
site. I lift it up and show them. I have an invisible disease now,
so I'm always telling friends and the phlebotomist and everywhere I
go about my disease.

It's just so rare. People just look at me and they don't know
about it. Can't wait to do some fundraisers for this disease,
because nobody knows about it. It would be perfect for me in the
area, Michigan State, the East Lansing, Michigan. I would be very
blunt with them and tell them how I felt my experience, what I went
through and to tell them that it does get better. That getting used
to the medicine was very difficult. I felt like I had the worst flu
ever for two and a half months.

I was always told. Nobody told me that. Everybody said, "Oh,
you'll get better in a few months. You'll feel better." Telling
them that and the nausea and the different side effects in
everybody. Side effects would be different, but the most common was
those flu-like symptoms. I would just be honest and open with them
and that try to hide these effects from them.

That's what I wish I had when I first started getting used to
the medicine. Months later, you just feel better and better and the
oxygen going ... Without it, if you just eat or just go to the
bathroom and walk was a huge difference. I have an oximeter and I
always check my oxygen. Your body talks to you, so if you're worn
out or if you're taking a walk and you feel a little bit a
shortness of breath, stop and relax. Smell the flowers and blow out
the candles. That's how I would explain it to them.

About the Podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday.
Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death.
Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease.
Learn more about PH at www.phaware.global